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The Caregiver’s Companion: Support Through Insight

Isolation is a precursor to extinction. Perhaps, to most of us, the word extinction is benign, in that it historically has applied to dinosaurs, woolly mammoths and other creatures that we’ve never seen. While many of us lovingly concern ourselves with the real importance of preserving certain animals, wildlife, etc., we blindly accept and participate in a well-ingrained, social system of human isolationism that encourages, and too frequently dictates, the extinction of millions of our brothers and sisters.

Caregiving is an act of love as old as life itself. Since the dawn of humanity, wife has cared for husband, mother has cared for her children, and daughter has cared for her parents. Although today, more husbands, fathers, and sons are lovingly taking some of these responsibilities, the woman in the family still, most often, assumes the role of Caregiving. This is a role that we choose, most of us without hesitation, because we love our families and we want their lives to be full and peaceful and dignified, as they should be. And when their lives pass from this one to the next, we want to be with them, in the comfort of home. Until recently, wanting that for our loved ones was an expected desire. Today, however, a terrible thing has happened.

We have insidiously been stripped of our basic right: to love and care for each other at home. Most Americans Take pride in the belief that ours is the most civilized nation in the world. Yet, we have allowed the development and implementation of a barbaric practice of ignoring many millions of our citizens who simply insist on loving their families. And worse, this practice of isolationism is punitive. Not only are families not supported by the healthcare and financial systems, we are harshly devalued and, in a very real sense, punished for simply doing what we know is right. This practice is unacceptable. And we, as empowered lovers of the Earth and Her people, must find the means to abolish this anti-human policy or accept our own extinction. We must feel worthy of life.

Alzheimer’s disease killed Sara Oliver DuPre, the grandmother who reared me and my siblings (we called her GaSara), and it almost killed me. She was one of over 100,000 beautiful people who died with Alzheimer’s in 1994. Following that one year alone, I became one of the more than 300,000 Caregivers for those persons, who was left to rebuild a life for herself. I consider myself a Caregiver in Recovery because, even 23 years after GaSara’s escape, my healing continues.

An important part of my recovery, which in many ways began years before GaSara’s physical death, has been coping with my unnecessary anger and guilt. Learning how to turn my anger into action developed into a passion for me and has been empowering in my process to heal. I encourage all Caregivers to allow this passion to develop within themselves.

My experience is with Alzheimer’s disease and, accordingly, I write from that experience. The Alzheimer’s Association has released it’s 2017 Alzheimer’s Disease Facts and Figures report. Alzheimer’s, alone, currently afflicts more than five million Americans and is the sixth leading cause of death in the United States. By 2050, the Association projects that the number of people with the disease could rise to as many as 16 million. Furthermore, 15 million loving Americans provided unpaid care for persons with Alzheimer’s and related dementias in 2016, providing an estimated 18.2 billion hours of care, valued at over $230 billion. And more than a third of those Caregivers report that their health has deteriorated due to those Care responsibilities. They say that the cost to families will increase to $259 billion in 2017. According to the Alzheimer’s Association, the disease kills more Americans than breast cancer and prostate cancer combined. http://www.alz.org

Millions more of our people are afflicted with related dementias, due to stroke damage, Acquired Immune Deficiency (AIDS) HIV Complex Disorder and many with Parkinson’s disease. And many more are physically or cognitively dependent on others to care for them due to Post Traumatic Stress Disorder (PTSD), Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig’s Disease, Lewy Body Dementia, Traumatic Brain Injury and a growing number of other dementia-related afflictions, like Chronic Traumatic Encephalopathy (CTE).

While Caregiver respite programs have grown significantly over the past two decades, still, neither insurance, Medicare nor Medicaid cover most costs associated with the provision of activities of daily living (ADLs) to the patient, which are most vital to dementia Caregiving and financially devastating to families.

For these millions who suffer with these horribly debilitating illnesses, there are many more millions of Caregivers selflessly giving up their own lives and other relationships, tortured by the ceaseless decline of their loved ones, and forced into a deeply painful place of isolation and despair. And most of us, at some point, reluctantly accept that we are alone.

These are the very special people to whom this website wishes to welcome. Despite what the system tells you, You are not alone …

Please join me here, where I’ll share some of my stories and hopefully you’ll feel free to share some of yours. And let’s feel welcome together.

4 comments

Sissy, I’ve found the paradox of caregiving to be: every caregiver’s story is different. Every caregiver’s story is the same. When I read each of your heartbreaking and brave stories, it felt like I was having flashbacks to my own caregiving journey with my late mother. You are to be commended for your candor and your willingness to tell the truth about the messiness, as well as the honor, of being a family caregiver.

Thank you so much, Pam! I know it’s not an easy read, but I do believe the candor is necessary. So many people are going to face these issues. My hope is only to try and prepare them and, of course, remind them they are not alone. Bless you for your journey! ?